Category Archives: pregnancy

Book Review By An OTR: Life, Disrupted; Getting Real About Chronic Illness in Your Twenties and Thirties

Although I work in pediatrics now, I spent the first 10 years of my career in adult ortho-neuro rehab. This means that I worked with many young adults facing issues from RA, MS, Lupus, spinal cord injuries, and more. They were just getting started with jobs, raising children, and making an adult life, but they had to deal with chronic disorders that impacted every part of daily living. And their needs were different in some ways from the older patients, who developed issues in their 60’s and 70’s or beyond. THEIR children were grown, their careers were often over, they had saved for retirement, etc.

Why am I writing a review on a book about ADULTS? First, many of the kids I treat will grow up to be adults with chronic issues. Their parents may or may not acknowledge this at 3 a.m., when they think about their child’s future with some fear in their hearts. Second, the PARENTS of some of my clients have their own issues. Sometimes the same ones, but sometimes lightning does strike twice, and the child has a different issue or issues from the parent’s own concerns. Either way, people want ideas and the feeling that they aren’t the only ones dealing with these issues.

This book is written by Laurie Edwards, who faces a chronic respiratory illness with a combination of determination and honesty that other adults with chronic illness will find refreshing. She isn’t shy about describing how it has affected her relationships or her ability to look at her future. But the book includes many other stories. Within the book you will meet a college student with Ehlers-Danlos syndrome, a young mother with another respiratory illness, and others with common and uncommon diagnoses.

Chronic disorders or illnesses can make immediate decisions harder, but they make plans for the future harder as well. I have felt strongly that teens with chronic illnesses need to plan their careers based on more than their talents. The realities of living in the US mean that having health insurance isn’t a given. Having the ability to take paid leave isn’t either. The “gig economy” isn’t kind to people with chronic disorders, and until our country decides to change this, it is important to choose education and training that will allow a person with a chronic illness to obtain good care. It really can be a “life or death” decision.

Ms. Edwards also takes on the decision to bear and/or raise children. Although there aren’t any specific strategies offered, she walks the reader through her process, and the decision-making of other people with chronic illnesses and conditions. One of the great gaps in care, IMHO, is care for mothers with chronic disorders. Raising children is hard work. Hard physical work, hard mental work, hard emotional work. Lots of joy, but lots, and lots, of work. Protecting their health when faced with their child’s needs often means that women sacrifice themselves and do not realize that there are options that reduce risk while being the great moms they want to be.

The lack of useful information from the therapy community is just astounding. We know a great deal that could make life easier, but there isn’t anything available to parents unless they are lucky enough to have generous health care coverage that provides them with therapy sessions. I have found YouTube videos on lifting and carrying kids when you have physical disabilities…none by therapists. We know so much about this topic, but parents seem to have to figure even this simple thing out for themselves. When understanding the principles and their own abilities could make them empowered to plan for each situation as it comes along.

For more information, read Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues and Parents With Disabilities Need The Happiest Toddler on the Block Techniques . To read posts about children that have relevance for adults as well, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies and When Writing Hurts: The Hypermobile Hand .

CMV: The Potentially Disabling Virus Your OB Isn’t Mentioning

The New York Times ran a moving story in their October 25, 2016 issue about children who contract cytomegalovirus (CMV)  from their mothers while in utero.  CMV is a Greater Threat for Infants Than Zika, but far Less Often Discussed reminded me of the children I have treated with CMV:  multiply-disabled, with parents that didn’t know what those initials stood for until they heard them from their child’s doctor at diagnosis.

Deafness, blindness, cognitive and motor delays; sometimes the whole enchilada.  All from a virus that may not be evident in the mother or her family.  It is rampant in toddlers, those adorable beings who pick their nose and then touch every cookie on a plate, who put toys in their mouth then want a sip of your drink.

The most likely carrier of CMV in your family is your toddler in daycare.  They are bringing home more than macaroni pictures.  They may not even spike a fever and still have CMV.

The NYT reported that the American College of Obstetricians and Gynecologists does not insist on obstetricians mentioning this virus to patients because no treatment is available and no action is an iron-clad preventive.  They believe that patients should initiate the discussion and discuss what their concerns are rather than be told directly about CMV.

That’s like saying that because I cannot promise that you will never be struck by lightening, I won’t mention that sitting under a tree in a storm means that you are taking a risk!  I will let you ask me about how to prevent electrocution.

This is a bit of effort, but there are simple things you can do to reduce but not eliminate your risk while pregnant by:

  • wash your hands well after changing a child’s diaper or wiping them after toilet use.  Don’t check your phone on the way to the sink; wash first.
  • Do not share drinks or food with your children while pregnant.  Serve them a bite on their plate, not by nibbling on your food.  Cheerfully pour them a fresh cup of what you are drinking.
  • Teach your children to wash their hands well, and encourage hand washing in the adults in your home.

I wash my hands as soon as I enter a family’s home for treatment, regardless of the age of the children.  I don’t know if that mom is pregnant.  She might not know yet either.

Wash your own hands like it meant the future of your unborn child; it could.

Prepare Your Toddler Before Bringing a New Baby Home

Look at it as if your spouse announced that a new, younger, and more vulnerable wife was joining your family: ” She will need a lot of my close attention at first.  That doesn’t mean I don’t love you just as much, sweetie, but I won’t be as available to you as I used to be. She will sleep with me every night, but we will still have a few minutes together when she is resting.  I am so proud that you don’t need me as much as you used to!”.

How does that sound to you?  Not too wonderful, and yet you would realize that protesting got you criticized, and acting out got you punished.  Maybe there is another way to add a new member to the family?

If you ever had a reason to use The Happiest Toddler methods to build your toddler’s patience and develop his ability to deal with defiance and whining, now would be the time to take out that book again.  Read the chapter on the Fast Food Rule to deal with outbursts.  Then go on to the time-in section. Dr. Karp recommends the magic breathing stress reduction technique, as well as time-ins such as gossiping (about him to the baby in your belly) and “playing the boob” in which you set up situations in which your toddler is the one with the right answer, the more effective puzzle assembly skill, etc.  You are trying to shore up his self-confidence and self-calming to prepare him for the inevitable issues of jealousy and waiting longer for attention.

Toddlers love praise, but this is the time for focused, understated praise as well as chances to revert to being the baby for short periods.  It sounds silly unless you know that without being invited to cuddle like a baby for a few minutes, your toddler may insist on being a baby at exactly the moment that makes it impossible for you to comply.  As in the middle of a messy newborn diaper change.  You choose the moment, and you will get a better outcome.

Think this is the moment to move him out of the crib or take away the pacifier?  Those things are a part of his sense of security.  If you want to make these changes, you might do them well in advance of the birth or well after.  You would not want your toddler to resent the baby by associating these “losses” with your newborn.  Toddler anger and sense of betrayal is not going to last forever, but it can result in a loss of new skills such as daytime toilet training and even a willingness to walk instead of being carried.

I have heard of families obtaining a toy that the newborn can “give” to a toddler when you bring your new baby home, and I think this strategy can work for some children.  Some families like to have the toddler give a toy to the new baby as well.  Giving away anything when you are in a vulnerable state is harder than usual.  Your toddler might decide that he needs that rattle more.  If that happens, try not to criticize him for being selfish.  It is just a vulnerable toddler trying to shore up his strength in the face of changes he did not authorize and he realizes he cannot reverse.

Toddlers have a tendency to suddenly want to revert to infancy when they see you cuddling a tiny baby.  It can get ugly if that happens in the grocery store and he refuses to walk.  Instead of waiting until your toddler throws himself on the floor or insists on using only “baby talk, why not invite him to be your little baby for a short time?  By offering him the chance to pretend to be a baby, maybe hold him like a baby or babble to him, you are taking the reigns of when and how this happens.  The bonus?  Just like the magic of the Fast Food Rule, Dr. Karp’s signature plan for toddler communication, your stressed toddler sees you as someone who perceives what is on his mind with love and compassion.  Everyone wins.

Finally, practicing being helpful with the new baby, such as bringing over a clean diaper and shushing the baby, can be fun and paired with other good times such as special toddler snacks that the baby won’t be “allowed” to eat!

Healthychildren.org Has AAP Tips And An E-zine For Parents

There are so many sites out there, and busy parents aren’t sure what to look at first when researching health issues.  The American Academy of Pediatrics (AAP) has a website with a newsletter and an e-zine that can be a place to start.  They write a monthly newsletter on a wide range of subjects, and the e-zine is published much less frequently but goes into more depth on the issue’s theme.  Their advice sounds like the responses you would receive from your seasoned pediatrician, if they had the time to answer all of your questions.  Sometimes with a fussy child you just need to get in and out before things get truly ugly.

Do not expect in-depth research or much of a mention of alternative health ideas.  This is mainstream medicine.  But they do a nice job of organizing their information and the pieces are short and to the point.  When you have a quick question, that can be enough!

Eating Fish in Pregnancy and Beyond: Eat This/Not That

The FDA has made an additional recommendation to pregnant and nursing women: eat at least 8 but not more than 12 ounces of certain fish for your baby’s health. Don’t eat too much albacore tuna but eat some light tuna. Specific choices they recommend are the fish most likely to have low levels of mercury. Their recommendation is based on a study that correlates higher IQ with greater fish consumption. This is not the same as causation, but they are confident enough to issue the recommendation. Previously they only warned of eating too much fish with mercury. Their new guidelines seem to be a response to the fact that many mothers interpreted the message as “Fish are dangerous”.

Other blogs are filled with questions about whether this is an elitist mandate for people who can afford wild salmon at $20/lb, or a governmental attempt to confuse women at their most vulnerable. No one seems to know why fish is a good idea for health in general. A specific type of Omega-3’s, a lower-fat source of protein, etc all are suspect. It could be that women who eat fish are not eating processed food. Everyone agrees that people are eating less fish in developed countries, and that fresh fish is either expensive everywhere or suspect when caught in local waters due to pollution fears. Vegetarians are eating algae to get the same type of omega-3 benefits.

What is a mother to do? Some take supplements to simplify and eliminate the risk of mercury, but there is no firm indication that supplements provide the same benefits that foods provide. Some carefully monitor every ounce that they eat and source their diet carefully.

The decision is so personal that the best anyone can do is get reliable information and choose a path that seems based in logic and not in fear. We will all be looking for the next government recommendation. Hope it involves chocolate!

Welcome to Your Child’s Brain: Book Review

Ever wonder if all the recommendations and “new” ways to raise your children are based on anything scientific? Well, “Welcome to Your Child’s Brain” will explain the current research behind popular recommendations such as eating fish during pregnancy and teaching your child another language while still in diapers.

Authors Sam Wang, PhD. and Sandra Aamodt, PhD. have written a book that is filled with useful information about brain development from the fetal stage all the way through the teenage years. Ever wonder what your 3-month old really sees? It’s in here. Why does your toddler son enjoy block play so much more than your neighbor’s toddler daughter? It’s in here. If you love science, you will love this book. if you just want to know how to get your toddler to eat spinach or whether watching baby videos will harm your child, you will love this book.

Issues like autism and ADHD are covered, as well as current research on language and math education. This book includes plenty of detail about regions of the brain understood to support all manner of thought, action and emotion. But just when you have had enough of the brain science, they give you a “Practical Tip” section that distills down the research into some information that you can really use today.

“Welcome to Your Child’s Brain” is worth the reading time. You will be amazed at what current neuroscience knows about your child!